This is a blog to chronicle the fabulous life of Connor Robertson. Despite the medical challenges that Connor faces at the moment he is a fighter. As his devoted & loving parents we want to see Connor enjoy all the adventures of life. With the wonderful support & love of our family & friends we intend on giving "our little bug" every opportunity in the world. We invite you to join us as we experience the journey together. May God be glorified in our chronicle of Connor's Adventurous Journey!

Thursday, October 05, 2006

It was about 9:00pm last evening when my body made an unconscious decision to get up from my perched position in Little Bug’s room, walk two steps to his bed and climb up on the platform they have provided to rise me just high enough above his machines and tubes as to not disturb him. Once there, I smothered him with silent kisses and whispered “I love you’s” in his ears before exiting his room for the evening. With a certain numbness and hollow feeling, I walked 53 steps to the elevator, pushed #5 and waited to exit. I turned the corner into the sleeping area and with robotic motion entered the 5 digit code to open the door to my sleeping closet. When I arrived, it was quiet and cold and empty, nothing a sleeping room should be. I have always been fond of falling asleep in a warm & cozy room with signs of life everywhere. Where are the signs of life in this 8 x 8 room? I know the obvious answer is ME! I am living and breathing, but why do I feel so void of life? Maybe because life, as I had planned it and hoped it would be is not within my reach.

I fumbled around in my bag to find one of Connor’s sleepers, and I curled up in my single bed grasping onto the smells of my precious baby boy. I had myself a good ‘ol cry and then found myself restless with the thoughts and truths that you are about to read. I often find myself in the darkness with thoughts that I just cannot ignore, but tonight the thoughts are rushing in with a vengeance. The words are swirling around in my mind like a million $10 bills in a wind tunnel, out of control and going no where. Suddenly, the words form sentences and the sentences form paragraphs and before I knew it this post was created. For months now I have used this blog to chronicle Connor’s progress, but I have also used it for an outlet for my feelings and honesty. This is yet another view into the vulnerabilities of my heart.

I have always been the “go to girl”. You know, the one who swoops in when the chips are down and brings a word of encouragement or lends a hand of support when others are in need. Anyone who knows me well, knows that this is true. It is second nature. It is who I was born to be. It isn’t hard. It takes no effort. It really doesn’t even take a second thought. To be quite honest, it has brought me some of the greatest joys of my life. I find contentment in being able to walk alongside a soul that is hurting or confused and I love to watch as transformations begin to take place. It is wonderful to know that God has given me a beautiful gift of stepping into the lives of others and helping to provide what they need at the very time they need it.

As of late, I find myself in a very different role. I don’t swoop in for others because I am in need myself. I haven’t given in the ways that I love to give for almost a year now and I feel displaced. I feel empty from being in need, but I also feel empty for not helping someone else in need. What a quandary!! I have realized that this wasteland that I am in is unfamiliar, unsettling, unproductive and unwanted. I never asked to be here. I never wanted to be here. But here I am, in need. I don’t quickly answer my family and sweet friends with a “Yes, come on down, we’d love to see you!” because I wonder if it will just be a depressing visit filled with more questions and more uncertainty that will frustrate everyone. This isn’t me. This isn’t the woman I am on the inside. I have come to the conclusion that I don’t “do” needy well. I am not accustomed to asking for help or support or even love. How do I make the switch? How do I transition from being strong to asking for others to help hold me up?

Many of you may wonder why it is that when you have asked to help us out why we don’t have too much to say. I know for myself that I am confused with the facts of being needy and needing support. It is the hardest thing for me to admit that I cannot do this on my own or that Randy and I cannot band together with our faith in God and let that be enough….It is not enough!!! We are definitely at a place where we need others, but it is so hard to receive. And it is even harder to ask for it!! It is humbling and it is overwhelming.

Is it pride that creeps in and makes me wonder if the blogs that I post will simply make people feel sorry for us or if they will really understand our suffering? When we comment about Little Bug’s progress, or lack there of, and ask for prayers, do you realize how that makes us feel as parents? We feel inadequate to face the struggles that Connor endures and we wonder how long we will have to continually ask for the army to rise up around us. When do we get to go back to being in the army? Could it be pride, once again, that kicks in when one more person wants to come and meet our precious son and I realize I don’t have the commodity of putting a cute little outfit on him to make him look as cute as possible for this new introduction? We have to introduce our son with a tube down his throat, naked as he came into this world, with every scar exposed for all to see. There is no “prettying” him up for our beloved visitors. Is it also pride which makes it so hard to admit how far behind we are in this world of development that Connor has yet to discover? How we wish we could talk about the wonderful milestones that we are reaching as a family and how we are watching Little Bug explore the world with wonder, but this is not a conversation that is ours to have at the moment. We do know it will come, but when? When will it come?

Oh Lord, break me of this pride if this is what it is. Repair what is broken inside of me that doesn’t allow me to receive with grace what so many want to provide for me, for us, for our little family. This is not an easy journey, Lord. It seems to be lasting much longer than we ever planned and it seems to be robbing us of so much. I feel like it should be easier for me to just make a decision to “choose joy”, but I find it most difficult to choose anything because our road seems to be so predetermined and so many choices have been taken away from us. Give me clarity dear Lord to trust you to redirect our path and bring our joy back into view. Would you quietly enter this displaced heart and fill it with your sweet spirit of conformity and love. Is it possible that you could replace this wandering and wondering heart with a sense of your shepherding and your guiding hand? I know that you know the way through the wilderness and I know that you will lead us to the promised land. I know it in my heart, by my faith that I have in your word, but my mind is beginning to doubt your plan. Take my doubt and wipe it clean. Take my questions and provide your clam and your peace for the answers that I must hear. You are a GOOD God and I do trust you. Walk with me in this lonely desert place. Breathe new life into my soul and allow your word to be proclaimed once again within my heart. Amen.

These thoughts, whether random or contrived or confused, are the still echoes of my soul. By very nature of their loud knocking on my minds door last night, they were words that were begging to find a place outside of me to be examined and to be laid for all to see.

Lovebug Hugs,Lori

PS ~ Connor’s condition remains the same today. He is heavily sedated and sleeping fairly well. They stopped his antibiotics today as the surgeon feels that he isn’t at risk for infections from the actual surgery any longer. He is still fairly puffy and they are tweaking his medicines to see if they can get more fluid off of him. Other than that, the plan remains the same to keep the breathing tube in until Sunday.

Wednesday, October 04, 2006

Not too much has changed today. The doctors have decided to keep Little Bug intubated until Sunday, at least. So that means 4 more days of complete and total sedation. Keeping Connor quiet is the best thing they can do for his recovery. So, we have resigned ourselves to many more days without seeing Connor's eyes open.

Randy left today to get ready for his trip overseas that he leaves for tomorrow. We always hate to see Daddy go away, but we will count the days until he comes back to us.

Off to get some sleep and try to shake off this terrible headache that I can't seem to get rid of.

Tuesday, October 03, 2006

After a long day of waiting, our Little Bug is back in his ICU room resting and trying to recover from his big day. We met with Dr. Kim and he explained the details of the surgery with us. He felt very positive about the overall outcome and went into some of the details about why the surgery lasted so long. First of all, the robotics take a bit longer because when he is working on the machine he has five little arms that are all inserted into Little Bug's abdomen that are working together to take each action he directs. You will see in the pictures that Randy is about to post that the machine is quite large and very technical. They had to blow up Connor's abdomen with CO2 so that everything would, in essesence, float around. After making the five small incisions for the little arms to enter Connor's body, it is then up to Dr. Kim to manuever the arms in the right fashion to direct each movement.

Once he was inside he saw that Connor had an extremely high level of scar damage from his past surgeries and his liver and stomach had actually fused together. He said that at first he was disoriented because of the size and shape of the mass, but once he was able to make sense of everything he began disecting his way through the tissue and everything became clear. He was able to successfully free each of the organs so that they are independent from eachother. It also became quite clear that the hiatal hernia was larger than anticipated. This was the first thing that he fixed. After fixing the hernia he attempted to make his way through more scar tissue to get to the esaphagus to redo the Nissen. Once again he saw where the Nissen had unraveled and attached itself to the liver. Once everything was all cleaned up inside and the scar tissue was removed, he was able to redo the Nissen at the proper tightness. We are hoping that this Nissen will hold and will actually help his reflux symptoms, and in turn help the rest of the GI symptoms.

The end of the surgery was actually the quickest part, as Dr. Kim put it. Because of all the scar tissue that was cut through there were 2 nerves, called Vegas nerves that were severed. Since the nerves are no longer functioning the way they should, Dr. Kim had to go in and cut the Pyloric Valve so that Connor's stomach can empty properly. This was a very quick procedure and once it was finished they were able to remove the Robot and prepare Connor to come back to ICU. Before he left the OR Dr. Kim removed his GJ feeding tube and reinserted a "Mickey Button" G-tube for feedings. This means that he will no longer be fed in his small intestine, but in his stomach. We are very glad about this because that means his feeding will get one step closer to normal. He will have to remain on continuous feeds for at least a month and then we can start transitioning to every three hour feedings and then transition to normal oral feeding. We are excited about this transition!!!

I know that was a lot of technicality, but overall, that is what happened today. Dr. Kim felt confident in the procedure and he feels that this will provide Connor with some relief. At this point, we have no idea what kind of help this is going to give him but we are hopeful that it will be the miracle we are looking for.

Thank you so much for all your prayers and words of support today. Little Bug's recovery is still going to be touchy because his lungs are still very sick. We don't know how long he will have to be on the breathing tube, but it will probably be a while longer. We will post as we have info about his overall outlook and the length of time we think we are going to have to be in the hospital. At this point we're still looking at 2-3 weeks at least.

Again, thank you for all your prayers. We know that God was moving on Connor's behalf today and we are thankful for a surgery without complications. When all is said and done, God is Good!!!

Dear Lord, We thank you for a good outcome today. It may not have been as conclusive as we had hoped, but it was successful!!! Thank you for holding us up today and for being with Little Bug during every second of this long day. Please remain a constant source of comfort for Connor and cradle him close as he is sleeping this evening. Thank you for our precious son, he is a gift from you and we treasure him with all of our hearts. We are blessed dear Lord and we thank you for watching over our little family. Amen.

Lovebug Hugs,Randy, Lori and Little Bug

PS~ We are holding up pretty well. We're tired, but we're still standing by the grace of God!! Hopefully tonight will be filled with sweet, wonderful sleep (for all of us!!!)

Well here we go again....down that long, cold, lonely hallway to the OR....Littlebug is the brave & courageous one in the bed!

The procedure setup was the longest because they used this new robotic arm machine called.......

....the "Da Vinci", which is basically an extention of the surgeon's hands that enable him to operate in small intricate places....like Littlebug's gut. It has great precision...which Mommy and Daddy really appreciate!!!!! But the strangest thing about this device is what it looks like when the surgeon is actually doing the procedure........

.....and here he is !!!! Yep he is operating on our Littlebug right now!!!....and Littlebug is across the room!!!!!!!! So to all you parents who get after your kids for playing to many video games....ya just might want to rethink that idea!!!!!

....so while the Doc is across the room the attending surgical team watches and controls what's going on at Littlebug's side!

....about 8 1/2 hours later they are closing up our Littlebug. The surgery took a little longer because they used that new machine but it enabled them to do the surgery with precision without opening up the tummy......

......so here he is our little war wounded hero....Our Littlebug will make his grandpa's stoop in emabarrasment at all the scares he has! If you look close you can see he only had small cuts where the probes of the Da Vinci machine went in. If they were not able to do it that way they were possibly going to have to extent that chest incision from the end you see (by the end of the sternum) all the way down to his belly button!!! OUCH Glad they didn't have to do that!!!

....so Mommy and Daddy where VERY glad that the surgery was done with only those small incisions and that our Littlebug came through with flying colors!!!!

Again thank you all for your prayers and concern for us and our Littlebug

Just got the page from the OR. We are on our way to our parent conference with Dr. Kim. Connor is wheeling his way back to his ICU room and we should be able to see him after our conference. We will post more after a while and we will add the pics from the operating room.

It's 4:00pm and we are just waiting for the final words from the operating room to let us know that the surgery is over. Things are definately taking longer than expected because of this new technology that they are using in the operating room. Dr. Kim assured us this morning that if things went longer than expected, not to worry, but to realize that it is just because of the robotic technology. Hopefully we will know more soon. We anticipate a call any moment.We'll post when we have new info.

We just got off the phone with Tori, one of Connor's OR nurses. She said that, once again, everything is stable and Little Bug is doing well. Dr. Kim is just about ready to start the Nissen redo and replace his GJ Feeding Tube with a new button G-Tube. She feels that they are about an hour or so from being finished and then it will be back to ICU for recovery. We anticipate talking with Dr. Kim in a parent conference about the surgery in about an hour and a half. We look forward to the insight that he has gained from seeing inside of Connor and we pray that he will feel positive about the outcome. More to come after our conference and then it will be off to see our Little Bug.

Dear Lord, Thank you for providing this day for Connor. Thank you that things have been uncomplicated in the OR, even though we know that Little Bug's situation is definately complicated. We are so grateful that you know all things and that you knew today would come and go with answers for us. Please Lord, provide those answers we pray. Amen

We just received word moments ago from Connor's OR nurse that things are proceeding without complications, but they are taking a little longer than anticipated. There is a lot of scar tissue to get through and this makes the operation a tad bit more difficult than most. She said they preparing to start the repair of the hernia and the redo of the nissen shortly. All of Little Bug's numbers look good as far as heart rate and oxygen levels go. All to say, that for the moment our prayers are being answered and our Little Bug is doing well. We will post more after our next conversation with the operating room.

Dear Lord, Please remain the center of the Operating Room and shine your light into the darkness of Connor's body. Illuminate the spots that need fixing so that there will be no mistaking what needs to be done to give Connor a better chance at a healthy and whole life. We ask for your life-giving breath to rest upon Little Bug as he goes through this battle with courage and bravery. You are a GOOD GOD and we thank you in advance for what you WILL DO today!!! Amen.

We just received our first pager call from the operating room. Connor has done well with receiving the sedation required for the operation. They placed one arterial line to constantly check his blood pressure and they place another perifial line to give him meds throughout the procedure. They started the robotic portion of the surgery at about 10:30am and he seems to be tolerating everything just fine. The nurses took our camera into the OR so they said they are getting lots of pics for us of this very new-fangled procedure. We are anticipating another update around noon or so. Keep the prayers up for Little Bug and Dr. Kim. We are hopeful for excellent results for Connor!!!

Dear Lord, Please direct the hands of Dr. Kim and this mechanical robot. We know that you are the author of all good things and all new things, as well. Please spare Connor from any complications and give him perfect peace as he undergoes this surgery. Give us your peace, your hope and your love to make it through these hours of waiting. Amen!!

Well its that time again, surgery #6 started at 0810. Lori and I made that familiar walk down the long hallway to surgery, kissed our Littlebug, then off he went to the brightly lite OR. So please say a prayer today for our boy. We'll keep you posted today as words come in. It should take about 5 hours + or -???

Monday, October 02, 2006

Hello everyone in blogger land....Dad here. Just had a nice long talk with the Doc for Littlebugs surgery tomorrow. Dr. Kim will be the surgeon to repair the Nisan wrap and to close up the hiatle hernia. We talked for almost an hour and yes I am a little concerned but at this point it is basically a necessary procedure and our hope and prayer is that it will rid our Littlebug of those terrible episodes he's had.

Surgery starts tomorrow at approximately 8am so be sure to say a prayer for our Littlebug as you go about your day. Dr. Kim will be using a robotic helper machine called a Da Vinci which is a new fangled device like laproscopy but better with articulating joints almost like human hands on the end of a small stick! The incisions will be small with this device so the healing time will be reduced considerably! But if there is complications they may have to open him up through a rather large abdominal incision. So again keep up those prayers...not only for Littlebug but for Dr. Kim and the whole surgical team to have wisdom, steady hands and especially Lord's guiding hands!

Lovebug hugs....Dad

ps: thanks for all your prayer for Lori. She's feeling better and on her way to the hospital right now!

While I am still getting over whatever stripped me of my energy, Randy is at the hospital with Little Bug. When I talked with him yesterday evening, he said that there was really no change in Connor. He is in a very controlled environment with his sedation and pain medication so he doesn't really even wake up. It's awfully hard to watch him this way. Randy is anxiously waiting to talk with the docs this morning and find out more about surgery. It looks like they have put him on the surgery schedule for Tuesday morning, the first case of the day. This could mean he will go into the OR any time between 8am and Noon. We'll post more when we have details.

I am feeling better today, just a lingering headache!!!! I plan on joining Randy at the hospital later this afternoon. By the way, many of you have asked how Randy's flying test went last week.....Well, as predicted, he passed with "flying colors"!!! He is awaiting word on his next trip overseas, which could be this week.

About Me

Hi my name is Connor Scott Robertson. I was born on January 11, 2006. My daddy is a pilot and I think that is so cool. My mommy gets to stay home with me which I think is super neat because we snuggle and cuddle alot. I was born with a special set of circumstances that require me to get some extra special attention from my doctors. I have Down Syndrome and a heart defect called an AV Canal. I have had a pretty eventful 1st year of life. I have been hospitalized most of the time and have spent alot of time in and out of doctors offices. Even though I have had a lot of difficulty so far, I am quite a fighter. My folks say I can do anything I put my heart and mind to and I believe them, because I am fighting really hard to become a big strong boy. Would you all take the time to say extra prayers for me? I know that God listens to our prayers and I believe he will answer our prayers to bring healing to my body. Can't wait to meet you all and have you watch me grow to be a mighty man of God one day.